Introduction:

After the completion of the Human Genome Project in 2003, people had the ability to explore our genetic code that can help understand who we are.¹ What once was a billion-dollar scientific project has now become a simple cheek swab that can be sent to various types of online companies for less than a hundred dollars. These innovations in science have opened many opportunities in healthcare such as personalized medicine, ancestry exploration, and self care.

However, with the easy accessibility to our genomes, there becomes an ethical dilemma because of the possibility that insurance companies can get ahold of this sensitive information. Genetic testing and genome sequencing has given researchers the capability to examine if individuals contain any type of life-threatening conditions like cancer or Alzheimer’s.² It’s unfortunate that this technology was designed to uncover potential risks and personal information, but instead, it is being used to deny health insurance to people or make them pay exceedingly unaffordable premiums. Since people are not able to choose their genes or control what they inherit, it’s not logical for insurance companies to upcharge their clients or make it seem like the patient is a liability. As science is continuously progressing to help benefit healthcare, it is vital to establish more enhanced laws or stricter ethical guidelines to avoid insurance companies from discriminating against you.

Protecting Genetic Privacy:

Using an individual’s genetic sequence to decide their insurance coverage is unreasonable and discriminatory due to the fact that people are not able choose their DNA or what they inherit from their ancestors. For example, a 4-year-old little boy name Paul is happy and healthy but later got discriminated against because he was at risk to develop an inherited genetic disorder.³ Paul’s mother sadly passed away due to sudden cardiac arrest when Paul was just 5 months old. Soon after, an uncle from Paul’s maternal side died in his early twenties from the same reason. Due to these two families members dying of a sudden death, Paul’s family decided to take action and find the root cause. The family went to a geneticist researcher who was able to discover that Paul and his mother had an alteration in a gene on chromosome 7, which helps control the heartbeat. This gene is one the causes for Long QT syndrome (LQTS), which is an inherited heart rhythmic disorder that causes fast or chaotic heartbeats and can lead to sudden death. LQTS can appear in two forms: acquired, which develops from another medical condition and is treatable if detected early, and congenital, which is inherited through DNA alterations and currently has no cure.⁴

 Many years later, Paul’s father Bob lost his group insurance policy that protected Paul and himself. Bob tried consistently to support his family by demanding to gain health insurance from various types of insurance companies. After many denials, one insurance company finally agreed to give Bob health insurance under the condition that they will only offer coverage to Bob and not Paul, since Paul had inherited the genetic disorder from his mother. Bob would have to go through the financial hardship if any medical issues were to happen to Paul in the future. Sadly, Paul’s story is just one of the heartbreaking incidences where a family or individual were affected by insurance companies getting ahold of genetic information and using it to withhold coverage.

As personalized medicine and genome sequences have become more common, the risk of your information getting into the hands of the unknown seemed too great to not take precautions. In May of 2008, the legislation introduced to congress the Genetic Information Nondiscriminatory Act (GINA).⁵ While GINA was set in place to stop potential discrimination in health insurances, it still leaves these wide gray areas that many insurance companies take advantage of or try to work their way around. Unfortunately, GINA does not protect individuals that are disabled or any long-term care a sick person might need. Studies from surveys have shown that many people that test positive for serious genetic conditions have been rejected from health insurance or have to pay a higher premium. This suggests that insurance companies are aware of this gray area and use the excuse that the person would require long term care for denial, even if they’re perfectly healthy at the time they are applying.⁶ Many legislatures are working to make GINA more amended, calling it ‘GINA 2.0’, so that insurance companies can’t be allowed take advantage of the weak spots in the act.⁷ There are many individuals who have faced insurance denial because of their genetics.

These real life encounters bring fear and uncertainty because they expose the reality of discrimination in our society. Being able to acknowledge these issues are essential to understand that there are many ethical problems with genetic privacy that must be resolved.

The Insurers’ Perspective:

Insurance companies give you a coverage quote by assessing an individual by risks, so companies argue that genetic information is part of that assessment to keep prices fair.⁸ To put this in perspective, it may seem unfair for a healthy individual to pay high insurance premiums, but it is reasonable for smokers to disclose their smoking habits and pay higher rates due to increased health risks.⁹ Insurers are allowed to apply up to 50% tobacco surcharges because research shows that smokers require costly medical needs.¹⁰ This same logic applies to genetic disorders. When insurance companies are unable to consider genetic information, individuals with greater genetic risks may end up paying the same as those who are healthy, creating questions about fairness in insurance pricing.

David Henderson, an economist and research fellow at the Hoover Institution, uses a strong metaphor to help better understand the logic that goes behind insurance pricing. He mentions the importance of accessing the personal risk information of a person to establish fair prices for protection coverage.¹¹ In his article, Henderson compares the roles of genetics in health to how age affects the pricing of car insurance, describing how insurance companies function by pooling people with similar levels of risk to determine price. He puts his ideas into view by giving the comparison of how a 90-year-old man poses greater health risks than a 25-year-old man in the same way as a younger man that is new to driving then an older man who has a perfect driving history. Henderson highlights how unfair it would be if everyone, regardless of their driving record or experience, had to pay the same amount for car insurance. If insurers’ are denied from seeing genetic data, there is a high possibility that everyone would have to pay the same premiums as those who are at risk for health problems to avoid insurance companies from going bankrupt. Henderson’s evaluation supports a better understanding to how delicate it is to balance fairness, privacy, and money. Policymakers stress that using genetic information is not meant to punish people, instead it is used to maintain a fair ground among policyholders and certify that coverage prices are determined from an individual’s risk level. This imbalance between insurers and people can lead to financial instability and drive healthy people away from essential healthcare as well.

There are scientific advancements happening every day and this requires society to understand how their genetic information can be interpreted and applied. This ethical issue is critical to address because it is about protecting insurance budgets and demanding equality to uphold the common good.

Creating the Middle Ground:

While the back and forth of this argument will never be truly fair, the only way to make both parties pleased is to create a compromise. One potential solution is to allow the use of genetic information solely for the purpose of medical treatment decision making rather than it determining coverage eligibility or premium costs. For example, an independent oversight committee can be created to review insurer access requests to help certify that genetic data can only be used when absolutely necessary and with the patients consent.¹² This committee could be the impartial party in the argument while also establishing a clear boundary between medical and financial usage, which additionally reinforces that the public would feel confident on how their sensitive data is being handled. This approach would guarantee that genetic data will serve as a healthcare purpose by helping physicians personalize treatment plans or take precautions to keep the patient healthy.

Additionally, genetic privacy laws could attempt to include some type of standardized disclosure agreement that clearly states out how the data can or will be used. There are studies that have shown how one of the main reasons people avoid genetic testing is because of the fear they have that it’ll be misused rather than it benefiting themselves.¹³ By refining this communication system and building transparency, its feasible that individuals could feel more comfortable pursing genetic testing without ever worrying about being discriminated against. This solution can also be a comforting mechanism that convinces people to do more genetic testing that would later lead to more advancements of science or medicine. This type of policy framework would help encourage cooperation, instead of there being this conflict between the medical community and the insurance industries. There needs to be a well-established stability that helps promotes impartiality and trust because genetic progress is extremely beneficial, but it can be ruined by financial differences.

Another resolution would be to develop an ethical approach that secures individuals’ genetic privacy while preserving financial stability of insurance companies. A way to do this is to ensure that people with genetically susceptible conditions are not penalized by being denied coverage at the time of application, when the patient is completely healthy. This way, genetic information can’t serve as an automatic determining factor for eligibility at the time of initial enrollment. To correspondingly maintain the finances of insurance companies, it is recommended to slightly upcharge an ill person gradually. For instance, if an individual discovers that they carry a genetic disorder and voluntarily disclose this information to a policymaker, insurers shouldn’t be permitted to use it until the individual begins to exhibit symptoms or develop health complications in relation to their genetic condition. At that point, insurance premiums could be progressively adjusted to reflect the increased demand for specialized or expensive medical care. Most importantly, these adjustments should be carefully overseen so that premium prices still remain manageable, and an ill person is not further burdened to the point that they avoid the care they need altogether. This approach is able to respect the ethical and financial issues that have developed because it prevents unfair treatment to people based solely on potential risk while also still acknowledging the insurers’ need to have financial stability. These systems and solutions could promote complete fairness to both parties.

There must be a moral commitment to ethics after both perspectives are evaluated. Society needs to choose what is fair and what best supports equality. It is unfair to treat people differently from something they can’t control, but also ignoring the financial challenges of insurance companies can also face consequences. To uphold human dignity, there needs to be sound judgement to be able to find a fair balance.

Conclusion:

The escalation of genetic testing has given our modern day society amazing discoveries for disease prevention and personalized medicine, but it is also disheartening to see that this fragile piece of information can be used against you. The current legislative protection of GINA is a step in the right direction to help prevent further insurance discrimination, but it doesn’t allow complete restraint of your information or how it can be controlled. Moving forward, policymakers and medical experts can work together to modernize genetic privacy protection laws. For example, there are current articles that mention how people are already working to create and new and improved GINA to guarantee insurance companies adhere to the current ethical standards, which can be favorable to guarantee that there are no more gray areas or loopholes to be taken advantage of.¹⁴ The problem of security can be resolved by introducing a new group of impartial people to oversee how genetic tests are being accessed, stored, and applied.

Ethical decision making is important because it creates rules that value understanding and care. Having an independent group to keep this ethical issue nondiscriminatory and honest is a small fundamental step towards justice. Even when the choices are difficult, protecting individuals is necessary to keep the healthcare system fair and unbiased. The understanding of the human genome is revolutionary in science, however, there are ethical responsibilities that must evolve with it.